Bloomington woman refuses to let ALS define her

BLOOMINGTON, Ind. (AP) — Vera Nicholson can no longer speak, gets her nourishment through a feeding tube, and stuffs a tissue in her cheek to control drooling.

She can’t drive, and gets around with a walker.

But while ALS has stripped her of many things, it has not corroded her spirit. And it’s been unable to suppress her sense of humor.

“When I break out crying, which I do for absolutely no reason, I make wounded-animal wailing noises,” she typed in an email. “I still attend church, belong to a euchre club, and go to other social activities. I guess you could say I am the silent partner.”

Amyotrophic lateral sclerosis, often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative malady that affects nerve cells in the brain and the spinal cord. The average life expectancy of ALS patients is two to five years from the time of diagnosis, though some patients survive more than 5 years.

Nicholson, a 78-year-old Bloomington widow, still works at home, handling the book work for the rental units she owns.

“I have a disease, but it’s not who I am,” she told The Herald-Times (http://bit.ly/1bPGPhY ). “I am still me. I still hug, laugh, and play games.”

Nancy Thompson, one of her two daughters, said the way her mother is handling her ordeal is an inspiration to the entire family.

“She’s been amazing,” Thompson said. “She knows she’s dying, and each day she deteriorates a little more, but she tries her best to keep her spirits up. She still loves to get her hair done, go to church, and be around her family.”

Because her mind and eyesight are unaffected by the disease, Nicholson remains a voracious reader. She’s currently engrossed in Karen Kingsbury’s book series and the Yada Yada House of Hope series. The highlight of her week occurs every Sunday after church, when she has lunch with her three children plus many of her 11 grandchildren and 15 great grandchildren.

“I still have a good time even if I cannot eat,” she wrote. “I love to watch the great-grandkids run around and play. We laugh together a lot.”

When she receives nourishment through her feeding tube, one of her great-granddaughters says, “It’s time for grandma’s milkshake.”

She communicates by email and text messaging, but also uses a special iPad and an app for her phone, both of which “speak” words that she types. At family gatherings, her communication tool-of-choice is a dry erase board.

“She still stays very much involved with her family,” Thompson said. “She loves to hold the babies in her lap.”

Recently Nicholson and her children, plus some of her grandchildren, spent 12 days at a condominium she owns in Florida.

“My children and grandchildren do everything possible to keep me comfortable and make sure all my needs are met,” she wrote. “My kids and grandkids take good care of me. They moved a new TV into the room where I sit, so I could watch from my easy chair. They get sponges, tape, and bandages for my tummy tube. My children stop by daily, and bring me the paper on their way to work. My greatest achievement in life is having such a caring, loving family.”

Nicholson’s first hint that something might be wrong was her voice. At first, it would quaver and crack. As time went on, it grew progressively weak — to the point where she was speaking in a whisper.

She saw more than a dozen doctors and underwent countless tests over a seven-month period before she was diagnosed with ALS a little over a year ago, at age 77. She credits Bloomington internist Mackenzie Lupov with making the initial diagnosis, which was later confirmed by an Indianapolis neurologist.

“I was stunned; I had never ever thought that this might be my diagnosis,” she wrote. “I had thought of cancer and other diseases but not this. I said, ‘This is a death sentence. . how long?'”

The answer was straightforward — three to six months. It’s now been 14, so she has already beaten the odds.

Nicholson said it’s not easy for her to go public with her terminal illness.

“I hate publicity,” she said. “I do not want anyone to know about me and my difficulties, but it’s important for others to know about this miserable disease.”

Nicholson said she receives a lot of support not only from her physical family but her church family at Free Methodist Church. One church member often brings board games to Nicholson’s house for them to play together.

She also gets an emotional boost from an ALS support group she’s belonged to since the fall of 2012.

“At the meetings I get helpful hints on things that have worked for others and lots of moral support,” she typed.

Nicholson is certainly no stranger to heartache. Her oldest son, Nick, died from a stroke four years ago. Her brother, Philip Shields, was killed in a car accident years ago; and she lost her husband, William, to a heart attack 21 years ago.

But ALS presents a personal challenge she’s never before encountered.

“It is not easy living each day knowing that you are dying,” she wrote. “With ALS, there is no chance. One of the support group member’s wife called it ‘a mean disease.'”

Nicholson wants to keep living at home, and her three children — Thompson, David Nicholson, and Susan Breeden — are making that possible. Though they all have full-time jobs, they spend time with her in shifts in her home. A friend stays with her Tuesday and Thursday mornings.

“She’s been there for us her entire life,” Thompson said. “Now it’s our turn.”